Humans of ME/CFS

Like many of us with ME/CFS, I vividly remember the day I first got sick. It was a typical Saturday morning in August, 1985. I was 30 years old. My 3 year old son woke up very early, as usual. I took him downstairs and fed him his breakfast. I headed back upstairs. And, that was when it hit me. Suddenly, like a ton of bricks. The energy drained out of me in an instant. I could barely drag myself up the steps and back into bed. I the stayed in bed, flat on my back, for the next 6 weeks.

Not only was I unable to read, I couldn’t even glance through a magazine. It just required more stamina than I had. Even talking was too much to bear. My doctor ran multiple tests, finally deciding that “maybe” I had a bad case of mononucleosis. As the months went by, I improved to the point where I was rarely bedridden. But each day was still a major struggle as the symptoms continued: horrible fatigue, low-grade fever, sore throat, headaches, night sweats, heart palpitations, cognitive impairment, numbness in the extremities, blurred vision, and much more. The list of my symptoms goes on and on.

Over the past 30 years, I have had good days and bad days, relapses and remissions. But I have never been completely well. I currently have been in a relapse for over 5 years meaning I am frequently housebound for weeks or months at a time. My hope is for significant government funding of research, so that effective treatments can be found, or maybe even a cure! I don’t want anyone else to have to go through life with this devastating disease.